Tinnitus Retraining Therapy

Discussion in 'Treatments' started by Jim, Mar 11, 2011.

    1. bobvann
      Devilish

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      E drums headphones
      Jastreboff has stated to STOP using them if adversarial & more or less find a competent professional. In some cases they do not help. Thanks all the same. The audiologist admitted being out of her depth & we decided to part ways until she can better educate herself.
       
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    2. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Telling someone white noise maskers will reduce if not even cure their pain-hyperacusis can be dangerous advice. Also, you can't know if their pain-hyperacusis won't improve if they don't use WNGs.

      Bryan Pollard said on a recent Tinnitus Talk Podcast episode:
      • There was a study earlier this year by Martin Pienkowski that was entitled ‘Rationale and Efficacy of Sound Therapies for Tinnitus and Hyperacusis’. In this paper he concluded that there are too few placebo-controlled trials that help to demonstrate the effectiveness of any sound therapy treatment and he highlighted that, especially for hyperacusis, only a handful of studies, mostly case reports, showed true benefit for hyperacusis, broadly speaking.
      • In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.
      • With pain hyperacusis, earlier this year in talk on treatment for pain hyperacusis, the spokesperson said that we treat pain hyperacusis completely independently now from loudness hyperacusis and it requires a much more tailored approach and, also, we typically don’t expect the same outcomes as we do with loudness hyperacusis.
       
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    3. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      @bobvann

      It is important to have a therapist that skilled in tinnitus and hyperacusis as counselling is often required when using WNG.

      I do hope you are able to find someone suitable Bob.

      Take care
      Michael
       
    4. Star64
      Kick ass

      Star64 Member

      Location:
      Melbourne Australia
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Noise induced
      Oh Michael you make me laugh, if it was not for this tinnitus forum then how would people get all your wonderful advice :LOL::LOL:

      WARNING!! YOU WILL NOT SEE IMPROVEMENT IN YOUR TINNITUS AFTER READING THIS POST :D
       
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    5. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @bobvann
      We all have to realise that there is more “CRAP” spoken about tinnitus ‘so called’ treatments than almost any other subject on earth.
      Most of these treatments have no real science behind them.
      Is anybody actually likely to use a ‘treatment’ for two years that is giving no sign of improvement, just to see if it works?
      REALLY??
      Particularly one that has been discredited by several other specialists.

      We must also remember that in this particular arena there is no such thing as a tinnitus ‘guru.’
      Nobody knows as much, let alone more, about your tinnitus than you do.
      We have to be our own saviours, by trial and error.
      If something ‘feels good’ then do it.
      If something ‘feels bad’ then don’t do it.
      If coming on to a support site, such as Tinnitus Talk, for companionship and suggestions, helps you feel less lonely, then keep coming here.
      It will do you no harm, and may be of great benefit.
      Don’t allow anybody to taboo it for you.

      Also be wary of authoritative advice.
      When somebody tells you that their tinnitus was unbearable, but ‘by this means’ they were cured -
      be skeptical.
      Despite their claims - their tinnitus may be anything from insignificant to mild or moderate.
      Probably not on the scale of yours.
      You have absolutely no way of knowing.

      We are all searching for ways to alleviate this condition of course - my own aid is a daily session of meditation - but I do not push it as a universal ‘treatment’ - it won’t help everybody - just a suggestion.

      Trial and error - and be your own guide.
      All just my own ‘two bobs worth.’

      Dave x
      Jazzer
       
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    6. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      The big question about hyperacusis, still unresolved, of course, is... how do hyperacusis sufferers get used to sound that may be damaging or very bothersome for everyone?

      With this I don't mean sounds like dishes clanking or fork on a plate... but like a loud motorbike, the odd noise from a power saw or a jackhammer round the corner... stuff like that. And for that there is no answer.

      Habituation to music at home, at 80 dB on a cheap dB meter does not feel like the being around traffic reading 80 dB on the same cheap dB meter. Let alone if we are talking about sounds peaking 100 dB... out there, in real situations, in the real world... and no one has addressed this question successfully yet.
       
    7. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      You make me laugh too @Star64 and thanks for your kind words.

      On a serious note. My advice to keep away from tinnitus forums only pertains to those having or about to start tinnitus treatment. The reason being, it is better to have the mind clear and to be positive and concentrate on other things beside tinnitus and thus, give the treatment time to work. In addition to this, there are some people in tinnitus forums this one included, with a negative bias towards tinnitus treatments and believe them to be ineffective. Some (not all) are quick to challenge a person if they are having TRT or CBT for example and try to convince them these treatments do not work. This happened last week where someone was posting their success so far with TRT. This created a storm of controversy and I also got involved to support TRT for I have had it twice. The person in question has now left the forum because of negative comments.

      Nice to chat with you take care.
      Michael
       
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    8. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      There is only one problem with tinnitus.
      ‘Coexistence - and how to achieve it.’

      My only suggestion is - experimentation.

      Read up on TRT - CBT - WNGs - Meditation,
      and keep an open mind.
      If a course of action ‘feels’ right - keep going,
      if not, then do not be persuaded that you are being negative by rejecting it.

      Leave any idea of ‘negativity’ to those who are obsessive about using it.

      Unfortunately we are stuck in a scenario where there are no credible specialists - nobody has the answer.

      ‘If it feels right - it is right.’
       
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    9. bobvann
      Devilish

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      E drums headphones
      Absolutely. Hey I was able to school an audiologist who has chosen to further her education. I do have my better health plan so I am not out of options. She stated she would contact me after taking some courses but who knows how long that will be. She has the potential to make a great therapist due to her humility IMO.
       
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    10. bobvann
      Devilish

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      E drums headphones
      For sure especially when such advise differs from the person who has actually created the program & other professionals. The correspondence I had with Pawel Jastreboff was formatted into a Q&A in this thread for everyone to read. This is coming from him, not something I am blowing out this out of my @ss.

      I am a big boy & fully capable of making up my own mind.

      I have tried WNG's on a few occasions and it is a bust.

      What do they call the theory of trying something over and over again expecting different results? :D:D:p

      Having said that I would be willing to work with that nice young Audiologist again because she is the only one I actually trust. The fact she recognized she was in over her head for the time being & is willing to go further educate herself speaks volumes.

      I deal with things through humor (just look at all the silly thing I post in the OT threads:LOL:)

      It definitely helps with keeping spirits up and it's good ol fashion fun!
       
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    11. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      I agree with you all the way Bob.
      Certainly - if we lose our sense of humour we are stuffed.
      With regard to Tinnitus treatments, and life in general, I am a skeptic.
      I question everything.

      One thing I know for certain:
      noise - excessive volume of sound - has been our enemy.
      I do not agree with any ‘therapy’ that promotes further noise, while stimulating nerve cells.
      I wouldn’t touch Neuromod with a barge pole - even as a gift with free flight tickets.
      (I spoke to their rep. on the stall at the Tinnitus expo in Birmingham two years ago.
      It looked like complete guesswork to me, with dubious science, if any, behind it.)
      I will not use hearing aids, for the same reason that I will not use headphones.
      Why amplify any sound coming in?
      Similarly, my feeling about WNGs is that they are counter productive.
      More noise - with an added extra tone thrown in.
      Yes - I’ve read all of the arguments for them - and personally I don’t believe a word if it.
      Now working with the nice young audiologist sounds like a great idea Bob.
      (.......er.....was she a ‘looker?’.....just wondered.)

      Dave x
       
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    12. bobvann
      Devilish

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      E drums headphones
      :D:D:D:D:D:D:p

      I do remember you saying that about using any sound therapy. I agree from what I am seeing for Lenire.

      At around 6 to 10 grand possibly more for the "privilege."

      Charlatans are alive and well in the 21st century!

      This clinic I 1st went to https://soundidears.com/what-we-do/tinnitus/

      With whom was supposed to be one of the more knowledgeable practitioners back in 2018.

      Here is what Jastreboff had to say in regards to her approach.

      Pawel Jastreboff: I AM NOT RECOMMENDING USING WH AND CHIMES IN TRT
       
    13. Jack V

      Jack V Member Benefactor

      Tinnitus Since:
      1/2020
      Cause of Tinnitus:
      Something Wicked This Way Comes
      I have a question about the JAMA TRT report.

      It states:
      source: https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/2734346


      My question is, when it refers to the "standard of care," what exactly does that mean?

      For example, in this sentence:

      "Tinnitus retraining therapy with conventional sound generators is no better than tinnitus retraining therapy with placebo generators or standard of care."

      What exactly is "standard of care?"

      Also, what is the difference between a conventional sound generator and a "placebo generator."

      If you happen to know the answers, thanks in advance!
       
    14. Tybs

      Tybs Member

      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Fall from stairs
      With many ENT's here, this could be summarized to "Learn to live with it"... but I don't know if that equals the article's view.
       
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    15. lymebite
      Vegged out

      lymebite Member Podcast Patron Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      My guess is that standard of care refers to the Clinical Practice Guidelines for Tinnitus published by the American Academy of Otolaryngology. In the United States these guidelines are considered the standard practice that ENTs should follow for evaluation and treatment of tinnitus.

      The document is rather long, but for a summary, see the Flowchart on Page S9.

      https://journals.sagepub.com/doi/pdf/10.1177/0194599814545325
       
    16. Tybs

      Tybs Member

      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Fall from stairs
      Well, this explains a lot. Not a single mention of possible tinnitus causes non-hearing related. Had I followed the first advice I was given (just live with it), I'd still be stuck with screaming menaces inside my head and unnoticed neck issues.

      With the broad range of causes going around, you'd think an ENT would at least ask if there was some kind of physical trauma recently... I wouldn't expect him to treat it (not their field of expertise), but a mention of other possibilities than just the ears could help some patients massively.
       
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    17. bobvann
      Devilish

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      E drums headphones
      I'm a flag waver, the white flag I give up :eek::eek::eek::D:D:p:mad::(:dohanimation:
       

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